I learnt a new acronym yesterday: SWAN. It stands for Syndromes Without A Name. The term specifically refers to undiagnosed genetic conditions which are variously described as ‘global development delay’, ‘complex needs’ or more generally as unspecified learning/physical disabilities. I imagine that having an undiagnosed genetic condition, or having a child without a diagnosis, makes it very difficult to navigate the world in which diagnosis and labels are often necessary to ensure an individual’s needs are met, whether that be accessing resources, support, or information. Fortunately, there are good people like those at SWAN UK who are there to help.
Without appropriating the acronym, it isn’t just rare genetic conditions that go undiagnosed. There are many people living with physical or learning disabilities whose particular ‘symptoms’ (for want of a better word) do not correlate with a described condition. They are left without a label, without a community of others who may understand what it is to live with such a condition, and sometimes without access to the resources and support they need. They are swan-like in that what they experience is not named.
And then there are those who are given a diagnosis but the diagnosis is a term that describes a collection of symptoms which are not really understood, whose cause is unknown, and whose treatment is uncertain. Chronic fatigue syndrome is one such collective term. CFS can only be diagnosed by ruling out everything else therefore the process of giving a name to what an individual is experiencing is long and frustrating. A CFS diagnosis can feel like the health system is just saying ‘we don’t really know what it is’. What use is the name if the name infers ignorance rather than giving meaning? The answer is that giving name to something, even if that something is just an absence of knowing, has a purpose. It provides you with a tribe and perhaps access to resource.
Someone close to me with multiple and changing health problems has been given various labels over time and also has symptoms that remain un-named. On balance, I am not sure whether diagnosis – the naming, the label – are a help or a hindrance. What I observe, however, is that the system revolves around the naming. Diagnosis is the means by which rights are conferred or denied. Diagnosis serves a social, an economic and a political purpose.
I am no expert in this field, so let me move swiftly on to the safer ground of the education system. My interest here is whether diagnosis serves an educational purpose; not just of medical conditions, but of learning difficulties, mental health issues, and other perceived disadvantages. I am not sure it does. Furthermore, it may be counterproductive to meeting children’s educational needs in some instances.
As we know, schools are awash with labels and in love with diagnosis. Whether it is physical disability, learning needs, mental health issues, or economic disadvantage, diagnosing deficit as a means of understanding need and therefore directing resource is a school’s bread and butter. Naming is on the rise. In the last 8 years, the proportion of pupils with an identified special educational need has risen from just over 14% to over 18% according to government data, and this trend shows no signs of slowing. Less well measured is the prevalence of mental health diagnosis, but an upward trend is evident. One survey, reported by the NHS, suggests that ‘one in five children and young people in England aged 8 to 25 had a probable mental disorder in 2023’. I am cautious about such surveys as they often rely on self-reporting and are carried out by organisations with a vested interest in creating a narrative which supports the argument for more resources. We are also in an era where the pathologising of quite normal teenage emotions is happening and self-diagnosis by teenagers themselves, thanks to social media, is on the increase. However, anyone working with this age group knows that mental health needs have increased at the same time as access to support has decreased. More children carry a label, whether that label has been attributed to them by a medical professional, by a parent, by their peers, by themselves, or even by the school who are looking to understanding why they might be behaving in a particular way. Alongside the increasing naming of students as having learning needs or mental health issues, we have also attached labels which indicate economic disadvantage. Seating plans are awash with codified diagnostics. Indeed, in some classes a child will be in the minority not to have a coloured symbol or acronym by their name on the register.
When will we reach a point when the majority of pupils in schools carry a label? What then? When almost everyone is diagnosed as different, does different become the norm?
I suggest that labelling may be making the educational system worse; that the well-meaning desire to name and to diagnose has taken us down a dead-end road. I suggest that we will reach a tipping point where labels make the system so dysfunctional that purging them may be the only option.
This goes to the heart of what it means to be inclusive, a term that I have rallied against because it means so many different things. Instead of inclusion, what if our goal is to minimise exceptionalism and actions that make children feel abnormal? To achieve this, we would need to make our universal offer so good that it meets the needs of the vast majority of children for the great majority of the time. To achieve this, we would prioritise need over diagnosis (as Stephin Unwin argues eloquently for here in relation to children with learning disabilities). To achieve this, we would need to reverse the trend towards doing things that are extra and different.
To illustrate my point about the dysfunctionalism of schools, let’s start with anxiety. Many secondary headteachers I know describe the problem of getting some teenage girls to go to lessons. In some schools, this can be dozens of girls. There are undoubtedly complex reasons why this is happening. However, I suspect that one driver is the labelling of anxiety and the well-meaning practice of allowing these students to be somewhere else other than the classroom, which is claimed triggers their anxiety. The schools that appear to have the problem have invested post-pandemic in spaces around the school, sometimes multiple places, where students can go if they can’t face going to lessons. These are often really nice places, with sympathetic adults there to listen. However, the provision of these places has created a dependency culture which has unintentionally made the problem much worse. Conversely, schools which have geared resources to enabling students with anxiety to be in lessons and have given a strong message that lessons are the best place to be to overcome the anxiety have avoided excessive in-school truancy. You will often hear these students saying ‘I have anxiety’. In most cases, this is pathologising perfectly normal emotions which don’t need special provision.
In the above case, what does the teacher need to know? Labelling the child as having an anxiety disorder is probably not helpful. Teachers don’t need to know the diagnosis, they need to know the need. It would be helpful to tell the teacher that this child may need help feeling calm and relaxed in the classroom, describing the need over the diagnosis. The diagnosis can easily become an excuse, a reason for poor learning, whereas describing the need points to what needs to happen to ensure universal provision meets all needs.
Dysfunctionalism is apparent in relation to learning needs as well as mental health issues. Many secondary schools withdraw students from the curriculum in order to carry our interventions because the student has reading difficulties. Clearly the school needs to ensure students can read well enough to access the curriculum. To what extent could this be avoided if we invested upstream in more effective teaching? And would some of the need for withdrawal be lessened if teachers were more adept at supporting all students in engaging with challenging texts in the classroom?
There are various labels that get attached to children who have difficulties in reading: dyslexia, below age related expectations, struggling reader. These labels are not particularly helpful to teachers. Knowing a child in my class has dyslexia only helps me in so far as I know how dyslexia might present and what general strategies may help people with dyslexia. Firstly, this assumes that the student conforms to the typical profile of the group. This is fine if the clustering of symptoms is ‘tight’ i.e. there is little variance between one person labelled as dyslexic and another, but often these labels are quite loose and broadly group a range of quite diverse needs. Secondly, I might need to know quite different things about a child’s needs depending on what I am trying to teach them. If I am teaching practical PE, I don’t need to know how well the student can read, but I will need to know about co-ordination difficulties. Again, need over diagnosis. Thirdly, most of what I need to know about that student’s cognitive ability will be learnt by an effective teacher as they teach, test, and adapt to the learner as they engage with the curriculum.
My point here is that resources directed towards finding out what would help a child to learn are useful whilst resources committed to diagnosing and naming conditions are, to educationalists, misdirected and unhelpful. Diagnosis has a social, an economic, and a political purpose, but not really an educational purpose.
Lastly, moving from mental health to learning needs to economic disadvantage, we find the most useless of labels. The acronyms FSM or PP appearing on my register tell me nothing. Indeed, they are likely to lead to harmful assumptions, such as the presence of weak parenting, low ambitions, or low ability. Wherever I look, the labels distract me from understanding actual need. They prejudice stereotype over individual, they point to deficit rather than action, they limit expectations, and they delay action to meet need whilst a diagnosis is being sought.
I am left wondering whether the system would be better if these labels were wiped from our collective consciousness.
A school is anti-inclusive whenever a child’s difference is labelled and they are made to feel abnormal. A school is anti-inclusive whenever universal provision fails to meet their needs. We can never be truly inclusive by this definition as there will always be the need for ‘something different’ (whether that be special schools or interventions in mainstream settings), but the universal offer should almost always be enough and exceptionalism should be severely restricted. We cannot achieve this without investing in making the universal offer exceptional.
Can we imagine a system where almost all children are swan-like, who have their needs met without the need to name them, without the need to withdraw them from universal provision, and where we focus on need over diagnosis? This system would require a redirection of resource, a recalibration of services, and a reversal in the rise of labels. I am not sure this would solve all our problems, but it is a better this than allow the incessant rise of diagnosing, labelling, making exception and pretending that we have the resource to fund an education system that can provide something different to universal provision for more than a small minority of children.
If there were such a system, many currently pathologised conditions would become accepted as a version of normal, another flavour of being human. By meeting the needs of the previously marginalised everyone would benefit because what is good for these children in the classroom is often good for all. I am not describing a world in which there is no diagnosis – social, economic and political purposes would still be served by naming and grouping – but I am describing schools which do not require labelling of deficits to enable them to meet need.
Perhaps it is time to dump diagnosing and free ourselves up to meet needs.
Matthew Evans 
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